Friday, November 9, 2012

I keep pushing "I can see clearly now" into the musical spot in my brain, attempting to keep the negative out!  It's gonna be a bright sunshiney day!!

It's almost Friday again (well, now it IS Friday) and I’m way overdue for providing a Jacob update.  The past several weeks have been extremely hectic.  We've had both the fun and the not so fun.  I’d planned to write this post this morning, after a nice long run while TD was at Donuts for Dad with Gavin, enjoying a few minutes of quiet.  But… I was pulled over this morning for speeding, 46 in a 35 (not true!), and the officer was very ugly to me.  I was treated like a criminal and it really hurt my feelings.  I wish they would put more effort into finding the criminals who broke into our van and robbed me of my purse and camera!  So, I’m trying to de-stress from that right now, but didn't want to put off writing an update any longer.

The reasons I haven't gotten around to an update are mostly positive ones!  When Jacob and I returned home from Orlando, TD and I left the next day for a weekend in Apalachicola for my first half marathon and to celebrate our anniversary.  The kids stayed in Tallahassee with their grandparents and had a great time.  When we got home from being at the coast, we took our first family trip to Magic Kingdom and Islands of Adventure.  Both weekends were awesome and exhausting!  Totally worth it though.

Enough intro.  As of today, Jacob is feeling better.  It's been three weeks since his last oncology clinic appointment in Orlando where he also had an MRI, heart echo and heart EKG.  His heart tests returned with great results.  Heart looks healthy.   For you medical types, shortening fraction and ejection fraction, which are the things we are most concerned with, are normal :).  Echocardiograms often pick up trivial valvular flow issues.  His showed trivial tricuspid regurgitation which is not clinically significant.  He has normal jet velocity (or flow) from that valve. We will continue to follow the echo to watch the SF and EF.  The MRI results were as to be expected.  According to the Arnold Palmer radiologist, Jacob's MRI showed growth in many of his tumors.  They were comparing it to November 2011 and they really didn't tell me anything I didn't already know.  They did labs and detailed neuro and physical exams.  Everything checked out for him to start Lapatinib, so we left with a script and an appointment for a month from then. 

Getting the drug was not as easy.  It took two weeks to get it , along with a lot of frustration, but we succeeded and he started it on Tuesday, October 30.  It has to be taken on an empty stomach, so we are adjusting back to the 5:30 am wake up to make sure he can still eat before school.  750 mg twice a day is the full dose that most NF2 patients on Lapatinib are taking, but because it can be very harsh for the liver, heart and stomach, Jacob was started on 500 mg twice a day.  The first few days Jacob was very tired and didn't feel well.  He stayed home from school last Thursday and had a bad stomach ache Friday night.  Since then, though, he seems to be feeling normal.  We had a great weekend and he is back at the school grind this week. Tuesday, Jacob had labs to see how his body is responding to the new medication and everything checked out.  He will continue on.  He will go weekly for labs to check his immune system and liver functions.  At the end of the month we will return to Arnold Palmer for another EKG and clinic.  At that time, I believe they will increase his dose.  I really want him on the full dose as soon as it is safe for him.  We really need something to stop his tumors!! 

Speaking of school, report cards came out and both kids have some new goals for this 9 weeks.  I met with Jacob's teacher, changed his schedule a little bit and hope he will be more successful this time around.  He seems to be working harder this week.  Appreciating the little things!

We did get some really great news this week from Jacob's physical therapist, Amy.  She said Jacob has regained almost all of his previous range of motion in his neck.  She said his balance is a bit better and the scar area seems less tight.  Progress!

We also got our NIH dates - January 7th - 11th

And the NF2 battle continues.

Thank you for reading. 

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